Hi Everyone,
 

After much discussion and debate, the Board of Directors have decided to postpone the 2008 JSF&RCD Conference until the Summer of 2009. This was a very hard decision for all of us as we look forward to our biennial gatherings. The main reason for this decision was financial. We monitor our financial position very closely every month and compare our account balances from one year to the next. At this time in 2005, 1 year prior to the 2006 conference, our bank balance was $30,000 higher than it is today—1 year in advance of what would have been the 2008 conference. The expenses incurred by the JSF&RCD to host a conference are very high, and we do not feel we will be in a strong enough financial position in 2008 to hold a conference. Postponing the conference for 1 more year will give us more time to raise the necessary funds to host another conference. We will continue to reach out to companies for financial support, and we need your help, too. Your support is critical to the success of the JSF&RCD. Please participate in the annual Rainbow fundraiser (letter included in the Spring 2007 issue), or host your own event, to help us reach our goal for a conference in 2009.
 

As you all know, those of us who serve the JSF&RCD as Board Members, are volunteers. We are committed to the JSF&RCD and all of the families who reach out to us for support. Often times, our personal situations take priority and we are not able to formally support the foundation any longer. Two valuable members of our team have had to step down from their JSF&RCD duties due to career changes and family obligations. Karen Tompkins, our Secretary for many years, and Amanda Tulumalo, a Board member and Fundraising Chairperson, have resigned their positions. On behalf of the Board, I would like to formally thank Karen and Amanda for their contributions to the JSF&RCD over the years. Their guidance, opinions and ideas, and sense of humor, will be missed!

I am pleased to announce that Alison Ender has accepted a position on the Board. Ali has also volunteered to serve as Chairperson of the Fundraising Committee. We look forward to having Ali join our team.
 

If you have thought about joining our Board of Directors, and are not sure what that really entails, let me briefly explain the responsibilities of our Board members.

We hold a Board of Directors conference call every other month (typically on the third Monday of the month) from 7 – 9 pm EST. During these calls, we review old business, committee reports, and discuss new business.
 

On months without conference calls, we submit email reports updating the Board Members on various activities that occurred during the month, including committee reports. Every Board Member either chairs a committee, or sits on a committee (scientific, finance, correspondence, fundraising, conference, membership, grant, technical, biobank). Board Members also participate in the conference in various capacities, and help out with fundraising. During the month, various items may arise that require comments from Board members and communication is done primarily through emails.
 

Board of Directors, who serve 3 year terms, can be parents of children with Joubert Syndrome. They can also be aunts, uncles, grandparents, friends, professionals, etc. If you or someone you know is interested in applying for a position on the Board, please let me know as soon as possible

If you do not feel you can commit to our board at this time, please consider helping out on a committee. To find out more information about the committees, please contact any board member.

It is always heart wrenching to hear about the passing of our Joubert children. Sadly, we lost 3 within weeks of each other. I would like to send my condolences to Valerie & Armael Guilloux, Judy Crawford and Bonnie & Jeff Tolles. Andrea , 4 year old son of Valerie and Armael, passed away June 4th from renal problems.
 

Judy’s daughter Sara passed away July 24th. I spoke with Judy the day that Sara died and my heart was breaking as she struggled to stay strong. Judy was faced with such a devastating decision and she thought only of Sara and the foundation. She came to me wanting to donate Sara’s organs to our researchers. This is a difficult subject, but it is important to the research for Joubert Syndrome. Judy wanted Sara to make a difference by her passing. I assure you Judy…. She will.
 

Bonnie and Jeff’s daughter, Abby, passed away August 13th, less than a week after her 10th birthday. Abby was a courageous little girl who brought joy to all those who met her. Unfortunately, she experienced a rapid and dramatic decline in kidney function, and was ineligible for a transplant. Andrea, Sara and Abby will be remembered and will remain in our hearts.

Until next issue, I remain your friend and president,